Last updated on: 04/04/2017
1. Contact details
This data source is maintained by the following centre registered in the ENCePP inventory of research centres: MEMO
Name of data sourceEuropean Multicentre Bronchiectasis Audit and Research Collaboration
Name under which the data source should be displayed in the inventory (e.g short name if one exists)EMBARC
Name of organisation
1) Department/research groupEMBARC co-ordinating Centre
2) Organisation/affiliationUniversity of Dundee
Administrative Contact
Title Ms
Last name Megan
First name Crichton
Address line 1Clinical Research Centre
Address line 2University of Dundee
Address line 3
CityDundee
PostcodeDD1 9SY
CountryUnited Kingdom
Scientific Contact
Title Dr
Last name James
First name Chalmers
Address line 1Department of Respiratory Medicine
Address line 2University of Dundee
Address line 3
CityDundee
PostcodeDD1 9SY
CountryUnited Kingdom
2. Description/category
Disease/case registry
3.1 Coverage of licensed medicinal products
Licensed Medicinal Product
Comments
Hospital data
Community / general practice data
OTC
3.2 ATC code (5th level)
No
3.3 Other product dictionaries
No
3.4 Recording of indication for use
Yes
Is a coding dictionary being used?
No
4. Coverage of events
Event
Dictionary
Dictionary details
Adverse events (for pharmacovigilance databases)
No
Symptoms/signs
No
Diagnosis in primary care
No
Specialist diagnosis
No
Laboratory values
No
Specific event
Description: Bronchiectasis
No
Respiratory disease
5. Year of establishment
2015
6. Geographical origin of data
EEA/EFTA countries
Austria
Belgium
Czech Republic
France
Germany
Greece
Ireland
Italy
Lithuania
Malta
Portugal
Spain
Switzerland
United Kingdom
Non EEA/EFTA areas
Non EEA Europe (excluding Russia & former Soviet Republics)
Russia & former Soviet Republics
Middle East
7. Demographical extent of data collection
Nation-wide
8. Age groups
18 to 45 years
46 to 64 years
65 years and over
9. Size of the source/catchment population
10 a. Total (cumulative) number of persons with actual data
10 b. Number of persons with active data collection in past calendar year
2,000
11. Possibility to obtain additional information on the patient
a) Clinical information from treating physician?
Yes
b) Questionnaire data from the patient?
Yes
c) Genetic information or samples?
Yes
12. Possibility of links to other sources of data
13. Written policy governing data access
No
14. Committee to evaluate requests for data access
Yes
15. Charge/fee for data access
No
16. Selected publications of the last 5 calendar years using data from this data source
ReferenceLink to web-publication
1. Additional important research priorities for bronchiectasis in China
Aliberti S, Dhar R, Aksamit TR, Morgan L, Chalmers JD. / European Respiratory Journal 2017 49: 1602317; DOI: 10.1183/13993003.02317-2016
http://erj.ersjournals.com/content/49/1/1602317.long
3. Investigating the Etiology of Bronchiectasis: You Do Not Find What You Do Not Look For.
Amati F, Franceschi E, Gramegna A, Chalmers JD, Aliberti S / Respiration 2017;93:228-229 (DOI:10.1159/000455880)
https://www.karger.com/Article/Abstract/455880
5. Comparing accelerometer, pedometer and a questionnaire for measuring physical activity in bronchiectasis: a validity and feasibility study
O'Neill B, McDonough SM, Wilson JJ, Bradbury I, Hayes K, Kirk A, Kent L, Cosgrove D, Bradley JM, Tully MA. / Respiratory Research201718:16 DOI: 10.1186/s12931-016-0497-2https://respiratory-research.biomedcentral.com/articles/10.1186/s12931-016-0497-2
